The story of Cailin
Hello. My name is Cailin. I am twenty five, & has been dignosed with Hao Fountain Symdrome, that just commonly eect in younger children. It’s is rather Rare. I do things in my own unique was and do the things dierent-ways than others, and its has impacted my dailiy life and no wonder some of the struggles that i had in the past – were all connected/Linked to this rare diesese, I am also wanted to share you all my bit of my life and how it has eected me. 28thJune 2022 – (This was from one of a via Facebook Staus that i posted. As i wanted to let my Family and friends- To know i had my say and wanted to let them know,that I was Gutted to say won’ be able too go to Germany,To this conference talk,about this form of rather rare syndrome.That’s was planned, Although now I am wearing these splints.Due to an injury,From my fall, that I wastold I have torn a ligament and chipped a bone. I couldn’t even belive something from a such a fall. I hopefully will be able too go to the next event after my serious injury. Hopefully get to Germany another time. All so in my pass event, I had various things to having my toes straigtend and had steroids injection, and have had them quite few times, since now they wasn’t working so i get rather sore feet, due to having flat feet so it would cause some more future struggles ahead, but aterming too not let it get to me. Also i had my Te-Tubes removed from one ear as it was moving about and was stuck and it couldnt find it’s way to come out of my outer ear hole. I had to have surgery for them to remove it. Then just not long ago i recently had a ECG of my sleep pattern, as i twitch in the night, sometimes i may stop breathining for a second, that still an on going invesgugating weather i may have a eliepsy seizers or sleep ankea. All of these little things are most likely be all connected to my recent dignosis. researchers to find a cure for my condition -all of my diernet symtoms will be getting worse in the near future- I would expect but hopefully by then, This gene Hao fountain syndrome will find it cure and can be treatable. I also wanted to known others like me, are out there, you are not alone! I want to reach out and connnect with others, who do have this certain gene. Right now! Im one or two in a million who has it, In the u.k! Who is the oldest to have ever been dignosed with usp7 gene.